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Autism: When autistic children are no longer children

By Amy Stansbury, The Evening Sun

Posted:
06/15/2013 10:08:37 AM EDT

Scott Monzi, 13, sits in the sensory room at Amazing Kids Club in Hanover in this photo from 2009. Amazing Kids Club helps children with autism and other disabilities and the sensory room helps calm down the kids that may be too easily overwhelmed by many distractions. (THE EVENING SUN -- FILE)

Elizabeth spent many years flourishing in the sunflower-covered halls of Amazing Kids Club. She learned how to talk on the phone, schedule a doctor's appointment, and interact with her peers.

This place that her mother had built for her, and others like her, had actually worked. Amazing Kids Club appeared to be a true success.

Elizabeth's mother is Jennifer Seletzky-Davidson, founding director of Amazing Kids Club, an autistic support organization in Hanover. But despite Jennifer's efforts, as soon as her daughter Elizabeth turned 21, she was out of there. And there was nothing that Jennifer could do to stop it.

Once a child hits their 21st birthday, all of the support that they had from school or behavioral health services comes to a screeching halt, said Regina Wall Cote, director of the Pennsylvania Bureau of Autism Services. The medical assistance program that pays for everything from TSSs to Amazing Kids Club is no longer available, she said.

Even though Elizabeth does not suffer from any intellectual disorders and is able to attend classes at Harrisburg Area Community College, she is not independent, Seletzky-Davidson said. She still needs constant social skills training and reinforcement, Seletzky-Davidson added.

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“My daughter now goes to HACC,' Seletzky-Davidson said. “But is she still autistic? Could she benefit from an adult program if it were available? Yeah. That would be a dream come true.

Seletzky-Davidson would especially love to see her daughter attend job-training classes, in order to prepare her for interacting with co-workers, speaking with employers, or going on interviews. But at the time that Seletzky-Davidson realized this need, there was no place in Hanover that could fill it.

And so in her typical go-getter fashion, Seletzky-Davidson decided that she would build a place. Together with the Children's Home of York she tried twice to open an adult autism transitional center, but failed both times because of a lack of funding.

As it turned out, providing services for autistic adults was not as easy a task as opening a center for autistic children. The difficulty stems back to the Pennsylvania Bureau of Autism Services and the lack of Medicaid funds available for adults.

Amazing Kids Club in Hanover helps children with autism and other disabilities and the sensory room helps calm down the kids that may be too easily overwhelmed by many distractions. (THE EVENING SUN -- FILE)

In Pennsylvania, the only two state-funded programs for autistic individuals over 21 are the Adult Autism Waiver and the Adult Community Autism Program. Collectively, the two only helped 456 autistic adults in 2012. This is compared to the overall adult autism population in Pennsylvania, which according to the Pennsylvania Department of Public Welfare is about 7,000.
Compared to the rest of the country, the fact that the bureau even has these services is groundbreaking. Pennsylvania's Bureau of Autism Services was the first of its kind in the nation and its unique adult programming is only four years old.

One of these programs, the Adult Autism Waiver, pays for individuals to join programs that provide job training, life-skills instruction, and aid individuals with challenging behavior. Unfortunately the list of interested applicants already has 1,000 names on it and even with the additional $1.5 million in funding that Gov. Tom Corbett is promising in his 2013-2014 budget, the waiver will only be able to help an added 118 individuals.

This is particularly striking considering the rate of growth within the adult autism community in the state over the past few years. From 2005 to 2010, there was a 179 percent increase in autistic adults, and that number is expected to increase by 1,292 percent by 2020, according to the Department of Public Welfare.

The growth in the adult autism population in the state is more than just outstripping the growth in the services. A combination of heightened awareness, increased diagnoses, and tightening public budgets has left adult services virtually unreachable for the majority of Pennsylvanians.

It was this lack of available state funding that twice left floundering Seletzky-Davidson's ideas for a new transitional center.

“We planned. We met for a year,' Seletzky-Davidson said. “We had a location.'

But in the end, Seletzky-Davidson and her other partners could only find two people in the area who had waivers and could actually pay to attend the center. So it never got off the ground.

Seletzky-Davidson however insists that the failure of the transitional center was not for a lack of need. Her own daughter has been on the waiting list for a waiver for two years now and still has not been approved.

A statewide survey of autistic individuals and their caretakers found this lack of adult services to be chronic. More than one in four adults with autism reported that they needed, but were not receiving vocational training, career counseling or supported employment and more than 50 percent reported an unmet need for mental and emotional health services in general.

This lack of services seems to be translating into actual negative outcomes for autistic adults. The survey also found that two thirds of them are unemployed.